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Tuesday, February 28, 2012

Today, most people don't think twice about the accommodations that give people with disabilities greater access to the public sphere. Wheelchair lifts on buses and vans. Ramps and railings outside buildings and curb cuts on streets. Sign language interpreters in courtrooms. Children with physical or developmental disabilities in regular classrooms.

But 50 and 60 years ago - or even more recently - that was hardly the case. There were separate schools for children with disabilities, with grim, Dickensian names like Boston's Industrial School for Crippled Children. People with mental illness were locked up in facilities more like jails than medical institutions. Using a wheelchair restricted access to most public buildings and transportation.

The changes didn't come by accident. It was the concerted efforts of activists who, taking a page from the civil rights and womens' movements, slowly but surely built a grassroots effort to convince politicians and American society to take down the barriers to the disabled.

It's an epic story that Northampton writer and researcher Fred Pelka has chronicled in his new book, "What We Have Done," an oral history of the disability rights movement, recently published by the University of Massachusetts Press.

Based on interviews with dozens of activists whose work, bit by bit, culminated in the passage of the federal Americans with Disabilities Act (ADA) in 1990, "What We Have Done" represents years of work for Pelka as well. He first contemplated the project back in the 1990s but didn't get a book contract from UMass Press until 2004. At that time he also was awarded a $35,000 Guggenheim grant for the work.

But juggling his research with other freelance writing, he missed a few deadlines and wondered if he'd see the book through.

"One of the feelings I sometimes had ... was that I was doing this book 10 years too late," Pelka, 57, said during a recent interview. "Some of the people I interviewed were quite elderly, and I needed to get their stories."

But in the end, he says, "The people at UMass Press were great - they were really dedicated to making this the best book possible and encouraging me to keep going on it."

Pall of silence

The rights of disabled individuals is a subject Pelka's been closely connected to. He previously had written a one-volume history of the disability rights movement for ABC-CLIO, a reference book publisher, and before that he'd worked for many years as a personal care attendant for disabled clients in the Boston area and in the Valley. His longtime partner, Denise Krauth, who has multiple sclerosis and has used a wheelchair since the 1980s, has long been active in disability issues and at one time chaired the Governor's Commission on Accessible Transportation.

Pelka himself received speech therapy as an elementary school student, which he says he enjoyed and greatly benefited from. But the therapy, he adds, "had this weird sense of shame attached to it, and later I wondered, 'Where did that come from?' " In retrospect, Pelka says, it might have been that the speech therapy students never had a regular place for their sessions but were shunted to whatever space was available - including the school custodian's closet on one occasion.

As well, Pelka's older brother lost a leg when he stepped on a mine in the Vietnam War. After that, Pelka says, some extended family members and friends stopped showing up at their house, as did the minister of their church, who Pelka says had previously railed against war protesters.

"I knew other kids who had lost an older brother or had someone wounded in the war, and the same thing happened," he said. "There was this kind of pall of silence around the issue [of disabled young veterans]. Part of that was the politics of the time, but there also seemed to be this sense that damaged people ... should be out of sight, out of mind."

Along with legislative milestones like the ADA, "What We Have Done" chronicles the sea change that took place between the 1950s and '60s and 1990, as the rationale for segregating disabled people from the rest of the population was eroded. Many of those interviewed, particularly the most elderly, recount stories of being denied access to public schools, or being closed off from contact with other students if they were in a public school. One woman said her only contact with the "regular" kids came during an annual Halloween parade.

"Every Thursday they would have 'handicapped kids' go to the library," recalls Diane Coleman, today the director of a disability rights center in Rochester, N.Y., who had problems walking as a child. "It felt like they cleared the corridors so that no one could see us."

The book contains harrowing stories from people who endured harsh treatment, such as shock therapy - even as children - for mental illness, or spent time in massive facilities like the former Willowbrook State School in New York City. In the 1960s and '70s, Willowbrook gained national infamy as an overcrowded warehouse for mentally ill and handicapped children who suffered profound neglect, as well as physical and sexual assaults, at the hands of ill-trained staff.

The book also offers portraits of seminal figures of the disability rights movement, like Mary Lou Breslin, a California educator who co-founded the Disability Rights Education and Defense Fund, a leading national center on disability rights issues. Others include Judith Heumann, another California woman who organized sit-ins by disability activists at federal Health, Education & Welfare offices in 1977. As a result of the activists' efforts, federal civil rights legislation was extended to include people with disabilities,and Heumann went on to advise the Clinton and Obama administrations on disability issues.

Closer to home, the book includes interviews with people like Frederick Fay, a founder of the Boston Center for Independent Living in the 1970s, where Pelka spent time working. Started originally in Berkeley, Calif., the independent living model - taking disabled people out of institutions and giving them the means to live on their own, with help as needed - spread across the country, including to Amherst, home of the Stavros Center for Independent Living.

"What We Have Done" shows how the separate tendrils of disability issues began to coalesce into a national movement. People in different situations - from wheelchair users to people who are mentally ill or blind, to those who are deaf or hard of hearing - started to find common ground in their fight against discrimination. Challenges to individual schools, workplaces and medical facilities merged into court cases and demonstrations with national impact.

"This is the pre-Internet era, and you're talking about people who historically are poor, marginalized and isolated," Pelka said. "It's an amazing story. I mean, how do you organize a rally to protest the fact that there's no accessible public transit when there's no way for anyone to get to the rally? I was fascinated by the connections people developed as they built this movement."

Long battles

Pelka did not do all the interviews for the book, as he says the travel costs were prohibitive. While he generally interviewed people in New England and Washington, D.C., he relied on transcripts from an extensive oral history project maintained by the Bancroft Library at the University of California Berkeley.

"They shipped thousands and thousands of papers to me - they're all in boxes in my basement," he said with a chuckle.

Though a few people he talked to were hesitant at first to participate in the project, he says most welcomed the opportunity to tell their stories - and those stories, which spoke of long battles against physical and psychological pain and societal barriers, ultimately helped give him the energy and perseverance to finish his book.

Pelka, who also has published a book with UMass Press about a wounded Union soldier from the Civil War, said enforcing all the tenets of the ADA is an ongoing battle. His book, he believes, points to a bigger question: how to confront the aging of the boomer generation. He says there will be tens of millions of people who will likely have some degree of disability in the next 20 years.

"How are we as a society going to meet those needs? It's a question we need to ask.

About Me

I am full-time Mass Communication faculty at Towson University in Maryland and adjunct faculty in the City University of New York (CUNY) Master's in Disability Studies program.
I research media and disability issues and wrote a 2010 book on the subject: Representing Disability in an Ableist World: Essays on Mass Media, published by Advocado Press.
The media have real power to define what the public knows about disability and that's what I research.